On World Prematurity Day we talk to a Mum of twins born too soon.
My name is Fionnuala and in January of 2013 I was 27 weeks pregnant with twins, our first children. Up to that point the pregnancy had been relatively routine and uneventful.
On Friday the 11th, just as we were planning a weekend away in Donegal the following day, we went into Holles Street for a twins talk. At the start of the talk they came around to each couple to ask how they were doing. I had been having some mild cramps and pains, but thought nothing of them. They took a different view and referred us to admissions immediately- they wouldn’t even let us stay for the talk!
I was given steroids in case the babies came early as this is particularly important for lung function. By Saturday things had stabilised and I was hoping to be released on the Sunday. Early Sunday morning I had a bleed, and after further observation they found that I was in labour. This was possibly the scariest moment; when we finally realised that they were definitely coming that early. Too early. Listening to the doctor talking through their chance of survival and the potential problems and complications was terrifying.
By the time my husband made it in, I was already in the delivery ward. A doctor confirmed that the babies were coming and started going through some details of what we could expect. At their age, they had an 80% chance of survival and would likely spend two months in hospital if they did survive. He also listed off a number of other potential issues that they could have given their age and low birth weight. My husband Brian and I were devastated, and kept wondering what had happened and what we had done wrong.
We spent the whole of Sunday in the delivery ward and nothing happened. The next evening Tom and Emily were delivered by emergency C-section. They were 27 weeks and 6 days old, and weighed 860 grams each. Thankfully they both had good lung function, which gave them a great start even at that tiny weight.
They were placed in incubators and transferred to the neonatal intensive care unit (NICU) of Holles Street. In the rush to get them to ICU, they didn’t spot that Tom was a boy and told my husband that we had two girls. It was only about half an hour later when he went to see them in ICU that he was told that one of our daughters was a boy!
We were completely unprepared for their arrival. It was three days before we managed to pick names for them and we had nothing prepared for a stay in hospital. Tom and Emily spent the next 56 days in ICU, and our life revolved around the place… we spent every minute we could there.
There was an array of monitors hooked up to both of them, measuring everything from heart rate to blood oxygen levels. We got to know these well - every measurement and every beep - and we also learned to tell when things weren’t going well. The 56 days were a bit of a blur. Initially it was all a bit overwhelming but after a while we got into a routine, going in every day and organising breast milk for the kids. It was exhausting, but as we didn’t have other children to care for, we could get a decent night’s sleep once we went home.
Having a premature baby in ICU is all about taking things one day at a time. They explain to you that there will be good and bad days, and that there are always setbacks.
The first week both babies did incredibly well, and all of the early indicators were very positive. Then, after eight days, we got a call from the ICU at around 6am one morning. They said that something was wrong with Tom and that we should come in. We rushed to the hospital and up to the ICU to find a number of doctors standing around Tom’s incubator.
We were told that he had deteriorated severely overnight, they had tried to intubate him, but there were complications and he had to be resuscitated. When we saw him, he was deathly pale and a machine was breathing for him. It was the first real setback we had, and was extremely hard to come to terms with after things had just started to become somewhat normal.
Thankfully he made a recovery and despite one smaller setback later on, they both continued to make good progress.
Initially we could only touch them through the hole in the incubator, and we even had to be careful doing that as premature babies can be very sensitive to touch. We did our first nappy change through the incubator hatch when Tom was 6 days old.
We tried to spend as much time as we could with them, holding them, talking to them, and doing anything else we could to help stimulate them and their development. Over time, we were able to hold them and were encouraged to get as much skin to skin contact ask possible- this is something that premature babies often miss out on. We also learned to feed them, which was done by connecting a syringe to their nasal tube, and we gave them their first bath.
It was all about milestones, at first each day without a setback was a major achievement, then it became weeks. We waited for the results of their daily weighing to see how much they had put on. Receiving results of each checkup and scan was nerve-wracking, and each positive one was greeted with huge relief.
As things progressed, and they continued to improve and put on weight, they were moved to a less intensive unit of the ICU. Eventually they were moved from incubators to cots, and their multiple monitors were replaced with a simple heart rate monitor. At this stage, it was all about ensuring they were stable and had put on enough weight to go home.
After 56 days they were eventually ready to be brought home. That was a huge milestone for us, and an extremely happy (if somewhat scary) day. We had been looking after them for so long in ICU that we became used to having someone to ask if we had questions or needed support. Suddenly we were alone with the babies and had to figure it out for ourselves. It was a great relief to have them home but daunting at the same time.
They continued to be monitored on a regular basis in Holles Street for regular checkups and in Temple Street for checkups on their eyes. In April of this year, they had their 2 year assessment and were finally discharged- another huge milestone.
Thankfully, Tom and Emily are now perfectly healthy and happy children. We realise how lucky we have been with them, and that this is only the case because they had access to the best of care from the very start. We can finally just think of them as normal children, instead of premature babies.
By Fionnuala McIntyre.
Read about the National Maternity Hospital’s NeoNatal support and charities that help families here